I am new to the group

[Guest guest]

The word revenge has such a negative tone to it. Since your group is

to create a more positive atmosphere how about

bfl_empowerment_challenge or something more uplifting. Just an

observation.

> I am new to this group. I started my own group because of the

> ending of my awful marriage. The objective is to seek and provide

> support to those who had a life turning event that just may help

> motivate them into changing their lives. I want to help others

turn

> the negitive energy into something positive for themselves. It is

> just getting started so I could use the support of others at this

> time.

>

> I am currently on day #20 of this challenge. I have never

completed

> a challenge in the last 3 years of trying. I usually don't make it

> past the first week. This time I am doing so much better. I have

> already lost 9 lbs and lost many inches. I have alot of motivation

> and named my challenge " The Revenge Challenge " . Although I am

doing

> this for myself, it is nice to have some extra motivation behind me.

>

> Thank,

>

>

> BFL Revenge Challenge Group Link:

> bfl_revenge_challenge/

[Guest guest]

Maybe someday I will change it. So far it seems to be working

really well for me. I am sure after I complete this challenge I

will have to come up with a better name.

Thanks,

> > I am new to this group. I started my own group because of the

> > ending of my awful marriage. The objective is to seek and

provide

> > support to those who had a life turning event that just may help

> > motivate them into changing their lives. I want to help others

> turn

> > the negitive energy into something positive for themselves. It

is

> > just getting started so I could use the support of others at

this

> > time.

> >

> > I am currently on day #20 of this challenge. I have never

> completed

> > a challenge in the last 3 years of trying. I usually don't make

it

> > past the first week. This time I am doing so much better. I

have

> > already lost 9 lbs and lost many inches. I have alot of

motivation

> > and named my challenge " The Revenge Challenge " . Although I am

> doing

> > this for myself, it is nice to have some extra motivation behind

me.

> >

> > Thank,

> >

> >

> > BFL Revenge Challenge Group Link:

> > bfl_revenge_challenge/

[Guest guest]

Hey What ever works is what I say. Welcome

Bridgette

> I am new to this group. I started my own group because of the

> ending of my awful marriage. The objective is to seek and provide

> support to those who had a life turning event that just may help

> motivate them into changing their lives. I want to help others

turn

> the negitive energy into something positive for themselves. It is

> just getting started so I could use the support of others at this

> time.

>

> I am currently on day #20 of this challenge. I have never

completed

> a challenge in the last 3 years of trying. I usually don't make it

> past the first week. This time I am doing so much better. I have

> already lost 9 lbs and lost many inches. I have alot of motivation

> and named my challenge " The Revenge Challenge " . Although I am

doing

> this for myself, it is nice to have some extra motivation behind me.

>

> Thank,

>

>

> BFL Revenge Challenge Group Link:

> bfl_revenge_challenge/

[Guest guest]

HI SUE,

I HAVE SENT YOU A PERSONAL EMAIL, I HAVE HAD A HIP DONE.

MARGE I have been told that I am a candidate for LEFT HIP REPLACEMENT. I have had two drs...tell me the same... I can walk for brief periods.. I seemed to go downhill in just a few months... I had been diagnosed for the past few years with Bursitis of the hip.. many injections...finally I wenmt to a new Dr.. and he said Bursitis yes.. but osteoarthritis of the hip as well. bone on bone.. and bone s\cysts forming on the joint...I have a pretty mean limp.. which has caused some havoc with the Right leg/ and knee... I am pretty scared of the surgery... what can I expect.....the Op is scheduled for Dec 3rd.. any insight and what am I in for from someone who has gone thru it.. would help me so much... I was and still try to be active.... will I still be afterward...thank you all.. for any words Sue

[Guest guest]

Hi Sue,

I had my hip revised on 18/8/04 (aussie way to write dates).

To enable my friends and large extended family (who are all over the

world), I kept a calendar where my husband updated people on what was

happening while I was in hospital. After I came out I continued

entering some information until 18/10 when I made my last entry.

I will be removing the calendar on the 1/11/04 so if you want to take

a quick look feel free. To read the full story you need to start at

August. If you go to the bottom and click on list it is an easy way

to read the calendar without having to click on each link.

Some things are different eg: this was a revision, not a primary hip,

and the surgery was done in Australia. But it might give you some

answers, and I have found reading the experiences of others has helped

me so much.

Before I had my first hip done in 1990 my life was miserable. I was

in constant pain, and used a wheelchair to get round. Not a happy

life. My last 14 years have been wonderful. I have had a charmed

existence up to this new surgery.

At the moment I am struggling, but in writing the last paragraph I

started thinking about how my life was 14 years ago. Even the way it

is at the moment is better than it was then.

Just make sure you line up plenty of hugs for the recovery stage. All

I can say is that it was well worth it for me.

For the last 10 years I have managed healthy ageing programs and most

of my client group did not even know I had an artificial hip. I even

teach exercise classes as part of my work. line dancing, square

dancing, tai chi, walking groups, aqua aerobics, tennis, chair

football and bushwalking are just some of the activities I have been

responsible for. The only thing I didn't participate in was the tennis.

My boss says I am one of the most energetic of her 40+ staff members,

and she didn't know I had an artificial hip until I had to tell her to

plan my time off. Yes, there is life after an artificial hip if you

obey the restrictions and put the work into recovering strength and

movement.

Hugs

Margaret from Australia.

>

> I have been told that I am a candidate for LEFT HIP REPLACEMENT. I

> have had two drs...tell me the same... I can walk for brief periods..

> I seemed to go downhill in just a few months... I had been diagnosed

> for the past few years with Bursitis of the hip.. many

> injections...finally I wenmt to a new Dr.. and he said Bursitis yes..

> but osteoarthritis of the hip as well. bone on bone.. and bone

> s\cysts forming on the joint...I have a pretty mean limp.. which has

> caused some havoc with the Right leg/ and knee... I am pretty scared

> of the surgery... what can I expect.....the Op is scheduled for Dec

> 3rd.. any insight and what am I in for from someone who has gone thru

> it.. would help me so much... I was and still try to be active....

> will I still be afterward...thank you all.. for any words

>

> Sue

[Guest guest]

Hi Sue,

I had a right Hip replacement four years ago its hard to tell anyone how its like because for each person it is a lot differant but I think from four years a lot was inprove I had a hard time I had my knee replacement done three years the 23 of Nov, I had pain with my Knee but I think it was easier for me then the hip replacement now some people will say that the Hip is easier so like I said it depends on the person and the dr they have.

Well I wish you the best of luck and a speedy recovery.Have a nice day.

Susiesuevogel <suevogel@...> wrote:

I have been told that I am a candidate for LEFT HIP REPLACEMENT. I have had two drs...tell me the same... I can walk for brief periods.. I seemed to go downhill in just a few months... I had been diagnosed for the past few years with Bursitis of the hip.. many injections...finally I wenmt to a new Dr.. and he said Bursitis yes.. but osteoarthritis of the hip as well. bone on bone.. and bone s\cysts forming on the joint...I have a pretty mean limp.. which has caused some havoc with the Right leg/ and knee... I am pretty scared of the surgery... what can I expect.....the Op is scheduled for Dec 3rd.. any insight and what am I in for from someone who has gone thru it.. would help me so much... I was and still try to be active.... will I still be afterward...thank you all.. for any words

Sue

[Guest guest]

Dearest Margaret. thank you for the looking glass into your life

during this revision surgery...Your information and calendar were

wonderful. The biggest problem I am having is that on and off for

the past few days.. the pain has not been too bad.. the stiffness is

everpresent but the pain is tolerable.. So I thought well what is the

rush to do this... then I think well what if I wait and then it gets

so bad I can barely walk again..The pain is weird.. somedays so bad I

can barely get out of the car, or a chair.. other days i am just

stiff.....When I tell the Dr. .. he looks at the x-ray and says this

does not get better....--- I have read so much and yet I still feel

likemI am in the dark.. I live In New Jersey .. the hospital throws

you out in 3 days.... I am too young for REHAB hospital.... only

those on Medicare get to go...I went to Dr. In New York...His

proticol is 4 - 6 days in the hospital.. then home PT.. I live in a

house with steps....the bedroom is upstairs.. How will I fare...with

that.. They will send me home with a walker...but I don't think I can

maneuver stairs with a walker....How big was your incision...

You are an inspiration...I just keep thinking should I wait till the

severe pain returns...I ask the group for your input... I am in

pretty good shape.. if the pain returns I may became jelly muscled ..

i don't think that will help....Please I need advice from those who

know..

> Hi Sue,

>

> I had my hip revised on 18/8/04 (aussie way to write dates).

>

> To enable my friends and large extended family (who are all over the

> world), I kept a calendar where my husband updated people on what

was

> happening while I was in hospital. After I came out I continued

> entering some information until 18/10 when I made my last entry.

>

> I will be removing the calendar on the 1/11/04 so if you want to

take

> a quick look feel free. To read the full story you need to start at

> August. If you go to the bottom and click on list it is an easy way

> to read the calendar without having to click on each link.

>

> Some things are different eg: this was a revision, not a primary

hip,

> and the surgery was done in Australia. But it might give you some

> answers, and I have found reading the experiences of others has

helped

> me so much.

>

> Before I had my first hip done in 1990 my life was miserable. I was

> in constant pain, and used a wheelchair to get round. Not a happy

> life. My last 14 years have been wonderful. I have had a charmed

> existence up to this new surgery.

>

> At the moment I am struggling, but in writing the last paragraph I

> started thinking about how my life was 14 years ago. Even the way

it

> is at the moment is better than it was then.

>

> Just make sure you line up plenty of hugs for the recovery stage.

All

> I can say is that it was well worth it for me.

>

> For the last 10 years I have managed healthy ageing programs and

most

> of my client group did not even know I had an artificial hip. I

even

> teach exercise classes as part of my work. line dancing, square

> dancing, tai chi, walking groups, aqua aerobics, tennis, chair

> football and bushwalking are just some of the activities I have been

> responsible for. The only thing I didn't participate in was the

tennis.

>

> My boss says I am one of the most energetic of her 40+ staff

members,

> and she didn't know I had an artificial hip until I had to tell her

to

> plan my time off. Yes, there is life after an artificial hip if you

> obey the restrictions and put the work into recovering strength and

> movement.

>

> Hugs

>

> Margaret from Australia.

>

>

> >

> > I have been told that I am a candidate for LEFT HIP REPLACEMENT.

I

> > have had two drs...tell me the same... I can walk for brief

periods..

> > I seemed to go downhill in just a few months... I had been

diagnosed

> > for the past few years with Bursitis of the hip.. many

> > injections...finally I wenmt to a new Dr.. and he said Bursitis

yes..

> > but osteoarthritis of the hip as well. bone on bone.. and bone

> > s\cysts forming on the joint...I have a pretty mean limp.. which

has

> > caused some havoc with the Right leg/ and knee... I am pretty

scared

> > of the surgery... what can I expect.....the Op is scheduled for

Dec

> > 3rd.. any insight and what am I in for from someone who has gone

thru

> > it.. would help me so much... I was and still try to be

active....

> > will I still be afterward...thank you all.. for any words

> >

> > Sue

[Guest guest]

> >

> > I have been told that I am a candidate for LEFT HIP REPLACEMENT.

I

> > have had two drs...tell me the same... I can walk for brief

periods..

> > I seemed to go downhill in just a few months... I had been

diagnosed

> > for the past few years with Bursitis of the hip.. many

> > injections...finally I wenmt to a new Dr.. and he said Bursitis

yes..

> > but osteoarthritis of the hip as well. bone on bone.. and bone

> > s\cysts forming on the joint...I have a pretty mean limp.. which

has

> > caused some havoc with the Right leg/ and knee... I am pretty

scared

> > of the surgery... what can I expect.....the Op is scheduled for

Dec

> > 3rd.. any insight and what am I in for from someone who has gone

thru

> > it.. would help me so much... I was and still try to be

active....

> > will I still be afterward...thank you all.. for any words

> >

> > Sue

[Guest guest]

Hi Sue

You sound like me. I was ever scared of having

surgery and put it off till the pain was so great I

was willing to jump on that op table immediately. I

am so glad it is over. My surgery was Oct 4. I have

ceramic hip without cement so I have to use walker

will Nov 16 to keep weight off of it till it knits

well. I understand that this method is best for long

run success. Of course the bone on bone pain is gone

and the muscle pain will go away in time. I have a

good PT who comes to the house.

Here is wishing you well in you decsions LOVE RUTH

--- SUZANNE SNYDER <juneflower60@...> wrote:

> Hi Sue,

> I had a right Hip replacement four years ago its

> hard to tell anyone how its like because for each

> person it is a lot differant but I think from four

> years a lot was inprove I had a hard time I had my

> knee replacement done three years the 23 of Nov, I

> had pain with my Knee but I think it was easier for

> me then the hip replacement now some people will say

> that the Hip is easier so like I said it depends on

> the person and the dr they have.

> Well I wish you the best of luck and a speedy

> recovery.Have a nice day.

>

> Susie

>

> suevogel <suevogel@...> wrote:

>

>

> I have been told that I am a candidate for LEFT HIP

> REPLACEMENT. I

> have had two drs...tell me the same... I can walk

> for brief periods..

> I seemed to go downhill in just a few months... I

> had been diagnosed

> for the past few years with Bursitis of the hip..

> many

> injections...finally I wenmt to a new Dr.. and he

> said Bursitis yes..

> but osteoarthritis of the hip as well. bone on

> bone.. and bone

> s\cysts forming on the joint...I have a pretty mean

> limp.. which has

> caused some havoc with the Right leg/ and knee... I

> am pretty scared

> of the surgery... what can I expect.....the Op is

> scheduled for Dec

> 3rd.. any insight and what am I in for from someone

> who has gone thru

> it.. would help me so much... I was and still try to

> be active....

> will I still be afterward...thank you all.. for any

> words

>

> Sue

>

>

>

>

>

>

>

[Guest guest]

Hello Sue,

I am also new to the group and have not had my surgery done yet. I

have to have a Left total hip. I have seen some people with the

surgery done and these people was up walking down the street in 4

weeks with a cane. I think that is awesome for the type fo surgery we

have to have. i also have a bad limp and at time it hurts so bad I

don't want to do anything. I have been putting mine off for years

know and it is to the point that I really don't care what happens it

hurts so damn bad. I am 34 and I know it is pretty young to have this

procedure done. Check out this www.activejoints.com It has a new

procedure that is being done called hip resurfacing. Good luck with

your surgery.

Steve Sweet

>

>

> I have been told that I am a candidate for LEFT HIP REPLACEMENT. I

> have had two drs...tell me the same... I can walk for brief

periods..

> I seemed to go downhill in just a few months... I had been

diagnosed

> for the past few years with Bursitis of the hip.. many

> injections...finally I wenmt to a new Dr.. and he said Bursitis

yes..

> but osteoarthritis of the hip as well. bone on bone.. and bone

> s\cysts forming on the joint...I have a pretty mean limp.. which

has

> caused some havoc with the Right leg/ and knee... I am pretty

scared

> of the surgery... what can I expect.....the Op is scheduled for Dec

> 3rd.. any insight and what am I in for from someone who has gone

thru

> it.. would help me so much... I was and still try to be active....

> will I still be afterward...thank you all.. for any words

>

> Sue

>

>

>

>

>

>

>

[Guest guest]

steve.. thanks.. for your e-mail.. I have been told that hip resurfacing is a fix.. and thatin the end you willneed joint replacement anyway.. so why go thru two suregeries.???? if your pain is that severe.. just do the THR.. my pain has been on and off since april... I have some bad bouts.. then I get better for a time.. like this weekend.. I walkd 3.5 miles.. occasionally my hip jammed.. but then it unjammed and I was able to continue.. I want to see how I am tomorrow.. if I can walk at all after today..

lets keep in touch.... Steve Sweet <kidsweet2000@...> wrote:

Hello Sue,I am also new to the group and have not had my surgery done yet. I have to have a Left total hip. I have seen some people with the surgery done and these people was up walking down the street in 4 weeks with a cane. I think that is awesome for the type fo surgery we have to have. i also have a bad limp and at time it hurts so bad I don't want to do anything. I have been putting mine off for years know and it is to the point that I really don't care what happens it hurts so damn bad. I am 34 and I know it is pretty young to have this procedure done. Check out this www.activejoints.com It has a new procedure that is being done called hip resurfacing. Good luck with your surgery.Steve Sweet> > > I have been told that I am a candidate for LEFT HIP REPLACEMENT. I > have had two drs...tell me the same... I can walk for brief periods.. > I seemed to go downhill in just a few months... I had been diagnosed > for the past few years with Bursitis of the hip.. many > injections...finally I wenmt to a new Dr.. and he said Bursitis yes.. > but osteoarthritis of the hip as well. bone on bone.. and bone > s\cysts forming on the joint...I have a pretty mean limp.. which has > caused some havoc with the Right leg/ and knee... I am pretty scared > of the surgery... what can I expect.....the Op is scheduled for Dec > 3rd.. any insight and what am I in for from someone who has gone thru > it.. would help me so much... I was and still try to be active.... > will I still be

afterward...thank you all.. for any words > > Sue> > > > > > >

[Guest guest]

Sue

I had TRHR Oct 4 and am so glad I did. Like you, I

was scared and had tried everything imaginable to

avoid the surgery. My option had run out and the pain

got so bad I finally was anxious to jump on that table

and get it over with. I was 4 days in hospital, 5

days in hospital rehab and now have home health nurse

once a week to check and 2 times a week PT. I took

one step at a time with gratitude for help and

confidence in healing.

I am so glad to be free of that bone on bone sharp

pain with every step. Now I have the pain of muscle

healing and medication keeps it under control. My

surgeon prefers non weight bearing for 6 weeks after

surgery so I use a walker without wheels till Nov l6.

Since it is my right leg I will not be able to drive

for a few more weeks after that.

I am 76 and live alone. Friends call when they are

going to the store to see if I need anything. Lately

I have been able to take a walk with walker across the

street and walk the path for about 200 feet. It feels

to good to get outside and looking to better and

better every day.

Thanks for sharing. This chat room has been fine

comfort on the journey for me. Best wishes. RUTH

--- SUE VOGEL <suevogel@...> wrote:

> steve.. thanks.. for your e-mail.. I have been told

> that hip resurfacing is a fix.. and thatin the end

> you willneed joint replacement anyway.. so why go

> thru two suregeries.???? if your pain is that

> severe.. just do the THR.. my pain has been on and

> off since april... I have some bad bouts.. then I

> get better for a time.. like this weekend.. I walkd

> 3.5 miles.. occasionally my hip jammed.. but then it

> unjammed and I was able to continue.. I want to see

> how I am tomorrow.. if I can walk at all after

> today..

>

> lets keep in touch....

>

> Steve Sweet <kidsweet2000@...> wrote:

>

>

> Hello Sue,

> I am also new to the group and have not had my

> surgery done yet. I

> have to have a Left total hip. I have seen some

> people with the

> surgery done and these people was up walking down

> the street in 4

> weeks with a cane. I think that is awesome for the

> type fo surgery we

> have to have. i also have a bad limp and at time it

> hurts so bad I

> don't want to do anything. I have been putting mine

> off for years

> know and it is to the point that I really don't care

> what happens it

> hurts so damn bad. I am 34 and I know it is pretty

> young to have this

> procedure done. Check out this www.activejoints.com

> It has a new

> procedure that is being done called hip resurfacing.

> Good luck with

> your surgery.

>

> Steve Sweet

>

>

> >

> >

> > I have been told that I am a candidate for LEFT

> HIP REPLACEMENT. I

> > have had two drs...tell me the same... I can walk

> for brief

> periods..

> > I seemed to go downhill in just a few months... I

> had been

> diagnosed

> > for the past few years with Bursitis of the hip..

> many

> > injections...finally I wenmt to a new Dr.. and he

> said Bursitis

> yes..

> > but osteoarthritis of the hip as well. bone on

> bone.. and bone

> > s\cysts forming on the joint...I have a pretty

> mean limp.. which

> has

> > caused some havoc with the Right leg/ and knee...

> I am pretty

> scared

> > of the surgery... what can I expect.....the Op is

> scheduled for Dec

> > 3rd.. any insight and what am I in for from

> someone who has gone

> thru

> > it.. would help me so much... I was and still try

> to be active....

> > will I still be afterward...thank you all.. for

> any words

> >

> > Sue

> >

> >

> >

> >

> >

> >

> >

[Guest guest]

Steve,

It is true that some people get a revision from resurfacing. But at

34, if a resurfacing could buy you five or ten more years or

athletically active life, would it be worth it? From resurf, you can

get a revision to THR, if needed...but with a THR, you really can't

turn back. And remember, between the time you might get a resurf and

the time for a revision (and there's no reason to presume a revision

will be necessary) medical research may well have found ways to solve

you hip problems with grafting or restorative surgeries. If you need

a " revision " to THR after a resurf, you still have the full femur

head and neck...a full platform for the revision to THR.

With a THR, there is no turning back. At your age, if you're at all

athletically active, you will certainly need a revision, and every

revision will take more of your femur... until you run out

of " platform " for further revisions.

There people on the site who say they've been told they can't take a

bath, because the angle of the hip when rising can cause

dislocation. I know guys your age with a THR who can't pick up their

kids. You do have choices.

All the best,

Alan

> steve.. thanks.. for your e-mail.. I have been told that hip

resurfacing is a fix.. and thatin the end you willneed joint

replacement anyway.. so why go thru two suregeries.????

[Guest guest]

I have to agree with Alan here.

I had a LTHR when I was 39. Twelve years later I was told it needed

to be redone. So in August I had it redone (14.5 years after the

first one). I left it too long, but that is not the topic here.

Resurfacing could have been an option for me. I would have had more

range of movement, and wouldn't have had the osteolysis or have worn

through the polyethylene liner.

So here I am at 54 already with a revised hip. I've been off work

since August, and am not to return until at the earliest next year.

That is a lot of time without an income. I have been told that it is

realistic to expect a little less time with each revision before it

too fails. If it survives until I am 70 (16 years - unlikely) I will

be having my 3rd hip (2nd revision) at an age when most people would

be considered young to be having their first hip done.

When I was your age I wanted to be able to live a " normal " life. And

it is " OH SO GOOD " . I wouldn't want to deprive you of it for one

little minute. But I would investigate the options.

No harm done, and it might save you a lot of grief in the future.

Hugs

Margaret from Australia

> > steve.. thanks.. for your e-mail.. I have been told that hip

> resurfacing is a fix.. and thatin the end you willneed joint

> replacement anyway.. so why go thru two suregeries.????

[Guest guest]

-I had a bilateral hip replacement in July. My surgeon said the new

ceramic prostheses are good for 30 years! Lets hope they last that

long!

-- In Joint Replacement , " Margaret "

<zztinau@y...> wrote:

>

> I have to agree with Alan here.

>

> I had a LTHR when I was 39. Twelve years later I was told it needed

> to be redone. So in August I had it redone (14.5 years after the

> first one). I left it too long, but that is not the topic here.

>

> Resurfacing could have been an option for me. I would have had more

> range of movement, and wouldn't have had the osteolysis or have worn

> through the polyethylene liner.

>

> So here I am at 54 already with a revised hip. I've been off work

> since August, and am not to return until at the earliest next year.

> That is a lot of time without an income. I have been told that it

is

> realistic to expect a little less time with each revision before it

> too fails. If it survives until I am 70 (16 years - unlikely) I

will

> be having my 3rd hip (2nd revision) at an age when most people would

> be considered young to be having their first hip done.

>

> When I was your age I wanted to be able to live a " normal " life.

And

> it is " OH SO GOOD " . I wouldn't want to deprive you of it for one

> little minute. But I would investigate the options.

>

> No harm done, and it might save you a lot of grief in the future.

>

> Hugs

>

> Margaret from Australia

>

>

> > > steve.. thanks.. for your e-mail.. I have been told that hip

> > resurfacing is a fix.. and thatin the end you willneed joint

> > replacement anyway.. so why go thru two suregeries.????

[Guest guest]

Sondra,

The only thing I can think of is that maybe he means that some of them are

auras? Oh, who knows what half of these doctors mean, sometimes I wonder if they

even know it themselves.

Grace

sondrawaddell <sondrawaddell@...> wrote:

I have been diagnosed with epilepsy for about 6 yrs now. I had the

1st seizure out of the blue. I am 44 yrs old and in good health

otherwise. I am supposed to be hooked up to a portable eeg monitor

next week. My Dr. said that all of my spells are not seizures. I

don't know what he means by this. I have petit mal, partial complex,

and ran mal seizures. I am taking 900 mg carbatrol a day, and 1500mg

of keppra a day, so what is up with this. can anyone help me?

[Guest guest]

,

Has your little one been tested for the genetic disorders.

Please make sure you do not decide to go through a surgery until you are

sure it is .

My son had his tonsils removed... ended up NOT actually having .

He had some genetic studies which were negative, however since new mutations

have been discovered at NIH as late as 2002... he was re-diagnosed with

NOMID this year. The tonsil surgery did little for us... and now we know the

reason why!!

It can be a rough surgery and sometimes people think it is a very simple

procedure with little or no complications.... So please make sure you

discuss all options.

Prednisone does make fevers come sooner in some children.

Years ago it was thought to be a helpful tool when diagnosing ... if it

worked it probably is ... again this idea has changed... since

Prednisone is helpful in other fever disorders.

Please check out the files too.... see the info for the NIH (National

Institute for Health)....

They are up to date on the Periodic Fever Disorders.

education is the key... although no matter how much we learn there is much

to still discover.

God Bless,

Fran

Fran A Bulone

Mom to ph 6 yrs old

Waxhaw, NC

Owner & Moderator Group

[Guest guest]

I'm in Murrieta. My son was going to Loma but

will start going to Children's San Diego on January

31.

--- <alliandjason@...> wrote:

> My name is and my daughter ee is 20

> months old and has

> . She has episodes every two weeks. We are

> currently trying the

> Pred. at different doses to see what works the best;

> she is currently

> taking it for four days when she fevers. She was

> diagnosed in Oct. by

> an infectious disease specialist. She has had this

> since she was

> about 6mon. old and the episodes have continued to

> get closer

> together. We live in Southern California. Does

> anyone else live here

> with this illness? Next Tuesday she is seeing an

> ENT to check her ear

> tubes she got last April and I am hoping to talk to

> the ENT about a

> tonsillectomy. Does any one know what kind of

> information I should

> take with me in case she has never heard of ?

> Thank you all for

> being part of this website. It makes me feel so

> relieved to hear that

> I am not alone fighting this syndrome. We have had

> many dark days and

> we pray for healing all day everyday.

>

>

>

>

__________________________________________________

[Guest guest]

Hi Peggy,

I am no expert, but I definitely think steroids and HRT are a bad idea. With

all of that sugar, candida is probably an issue for you, especially given all of

your itching. I discovered my systemic candidiasis as a result of vaginal yeast

that would not go away. You might get itching in all sorts of places that are

indicators of candida. Even when I was still infected, my vaginal

cultures would come up as negative, so it makes the doctors confused. I would

suggest reading on www.wholeapproach.com just for starters. You will need to do

lots of research, because we usually end up self-treating as a result of doctors

not understanding the condition. No more sugar!! )

[Guest guest]

I AGREE WITH . Also: Sugar feeds Candida so you probably have grown too

much candida in your gut. Unfortunately it stays there. Good things to try

also are: Grapefruit Seed Extract (Not to be confused with grapeseed). It's

a natural anti-biotic that kills yeast. I would start out with the lowest

dosage for you because it's strong stuff and you don't want a bad " die-off "

reaction.

Alison, Chicago

_____

From: candidiasis [mailto:candidiasis ] On

Behalf Of susan

Sent: Friday, April 21, 2006 2:01 PM

candidiasis

Subject: Re: I am new to the group

Hi Peggy,

I am no expert, but I definitely think steroids and HRT are a bad idea.

With all of that sugar, candida is probably an issue for you, especially

given all of your itching. I discovered my systemic candidiasis as a result

of vaginal yeast that would not go away. You might get itching in all sorts

of places that are indicators of candida. Even when I was still

infected, my vaginal cultures would come up as negative, so it makes the

doctors confused. I would suggest reading on www.wholeapproach.com just for

starters. You will need to do lots of research, because we usually end up

self-treating as a result of doctors not understanding the condition. No

more sugar!! )

[Guest guest]

Alison

today I went to Whole foods and bought garlic, and probiotic that

includes grapefruit seed extract

and herbal ingred. that kills candida. I bought alphadopalis (sp) milk.

I don't want to overdose, but I was told to take the daily doses. I took

some an hour ago

and I feel different. I hope and pray that is what is wrong with me. I

have been going

through this for four months and I am tired.

this is what I was told:

GRAPEFRUIT SEED EXTRACT- This is a very potent antifungal that can help

kill candida, says Dr. Metzger. Because it's so potent, she cautions

women not to use more than is recommended on the label. Continue

treatment with capsules for 3 to 6 months,

she advises.

GARLIC-a candida killer, Taking capsules of garlic, which is also

antifungal, is very effective at killing candida, Take 500 milligrams

three or four times a day for 4 to 6

weeks.

PROBIOTICS-to normalize your intestinal flora-A probiotic supplement

containing the

" friendly " intestinal bacteria,'Lactobacillus acidophilus' and

'Bifidobacterium bifidum 'can help limit the growth of candida, says Dr.

Metzger. The supplement that you'll

probably find in the store is called L.acidophilus, with B. bifidum also

listed on the

label. Look for a refrigerated supplement containing both bacteria and

follow the dosage recommendations on the label.(it comes in liquid or

capsules, although I'm

not sure in the supermarket that they have the capsules)

On Fri, 21 Apr 2006 15:02:19 -0500 " Alison " <Callesto71@...>

writes:

I AGREE WITH . Also: Sugar feeds Candida so you probably have grown

too

much candida in your gut. Unfortunately it stays there. Good things to

try

also are: Grapefruit Seed Extract (Not to be confused with grapeseed).

It's

a natural anti-biotic that kills yeast. I would start out with the lowest

dosage for you because it's strong stuff and you don't want a bad

" die-off "

reaction.

Alison, Chicago

_____

From: candidiasis [mailto:candidiasis ] On

Behalf Of susan

Sent: Friday, April 21, 2006 2:01 PM

candidiasis

Subject: Re: I am new to the group

Hi Peggy,

I am no expert, but I definitely think steroids and HRT are a bad idea.

With all of that sugar, candida is probably an issue for you, especially

given all of your itching. I discovered my systemic candidiasis as a

result

of vaginal yeast that would not go away. You might get itching in all

sorts

of places that are indicators of candida. Even when I was still

infected, my vaginal cultures would come up as negative, so it makes the

doctors confused. I would suggest reading on www.wholeapproach.com just

for

starters. You will need to do lots of research, because we usually end

up

self-treating as a result of doctors not understanding the condition. No

more sugar!! )

[Guest guest]

Hallo Peggy,

My name is Ronelle and I am from South Africa. I relate to you 100%. I have

been seeing

doctors for 3 years now from skin specialists to several other docters and

nobody could

help. I started to think it is all in my mind because nobody could tell me what

is wrong

and nobody could give me something that works. I have been on cortosone courses

etc. About a month ago somebody told me about candida. I did research on the

web

and started a very strict candida diet. I also ordered a product

" candidate " from the

web. In SA the website is orders@... other website in other

countries is

nativeremedies.com

For the first time in the last three years, and especially last year in

September when the rashes came

out on my body, I HAVE NO ITCHING!!!! I have read a lot of emails and everybody

says that not every

person react to cures the same as another person but I can assure you try

everything something will help.

I am also drinking daily a very good Vitamin supplement, Biotin as well as

Grapefruit seed extract.

But please LEAVE THE CANDY that is a very big problem. With no doubt I can

tell you sugar is

one of the main reasons for the itching. I have tested it many times and found

when eating anything

with sugar I start itching that same day.

Be strong, possitive and keep it up with a proper candida diet.

Ronelle

I am new to the group

Hi my name is Peggy and I have a question...

Does anyone in the group have internal itching?

For the past four months I have been itching and scratching in moist

areas. I have seen five doctors but they do not know what it is.

But yet have no problem prescibing me pills. I have taken steroids

for one week only, doxepin, but that just helped me sleep at night. I

have purchased creams, ointments, lotions, etc. I read on the

internet that some women experience itching due to lack of estrogen.

So I called my doctor to prescribe me HRT. I wanted to try anything.

I did that for 7 weeks and it did not do any good except got rid of

my hot flashes. But at this point I would rather have hot flashes

than itching!

ONe doctor said she was surprised that not one doctor asked me to

take a stool culture for yeast, fungus type molds in my body. I

called my doctor and took stool specimen to the lab yesterday. I

doubt if it comes out positive, because I also read that fungus is

hard to find in these tests. Doctors do not have knowledge of this

type of problem.

Even if the test come out negative I am going to Whole Foods to talk

to someone about purchasing garlic, grape seed extract followed up by

probiotics. I am new to this although I do evening primrose and flax

seed oil on occasion.

Right now I didn't want anything in my system. I wanted to be clean

so the stool would be ripe. Heaven knows, I have tried everything. I

am going to a free workshop on finding out the natural way of

healing.

So does anyone have internal itching??

The reason I am asking is because the doctors all looked at me and

said we see no rash, no hives, the allergy tests all proved negative.

Mind you, I work at See's Candies and for the last year I have been

eating the candy left and right. Sometimes so much I would see

floating white balls infront of my face. One of my eyes almost faded

out (this happened twice). I do believe the candy has a lot to do

with it. Although I have not eaten the candy in a long time, I am

still itching. I tried to do the process of elimnation, but still am

baffled.

-P

[Guest guest]

Well you bought all the good stuff! I should warn you that there is a " Yeast

Die Off " that effects a lot of people. Here is a good article explaining it:

http://www.modernherbalist.com/dieoff.html

I used a 'Super Bowel Cleanse " and it was AWFUL. There was 576mg of Senna

Powder in it and I didn't realize the potency of it. I already have

digestive problems but this was SO bad. It felt like my stools where made of

acid! I definitely recommend drinking lots of water because getting the

initial toxins out of you may cause stools to be acidic or large. I actually

had to buy 2 enemas as well as hemorrhoid suppositories and gel! It was

awful. That is why I say go slow. Also, I've heard your bowels get dependant

on Senna so it isn't to be used for over a couple of days.

Also, I found the Probiotics that come in the small coated balls( " pearls " )

work better for me. The capsule ones were giving me heartburn. Supposedly

the " pearls " can go through your stomach and not get digested until it gets

to the intestines.

Good Luck!

Alison, Chicago

_____

From: candidiasis [mailto:candidiasis ] On

Behalf Of peggypooh1@...

Sent: Friday, April 21, 2006 7:31 PM

candidiasis

Subject: Re: I am new to the group

Alison

today I went to Whole foods and bought garlic, and probiotic that

includes grapefruit seed extract

and herbal ingred. that kills candida. I bought alphadopalis (sp) milk.

I don't want to overdose, but I was told to take the daily doses. I took

some an hour ago

and I feel different. I hope and pray that is what is wrong with me. I

have been going

through this for four months and I am tired.

this is what I was told:

GRAPEFRUIT SEED EXTRACT- This is a very potent antifungal that can help

kill candida, says Dr. Metzger. Because it's so potent, she cautions

women not to use more than is recommended on the label. Continue

treatment with capsules for 3 to 6 months,

she advises.

GARLIC-a candida killer, Taking capsules of garlic, which is also

antifungal, is very effective at killing candida, Take 500 milligrams

three or four times a day for 4 to 6

weeks.

PROBIOTICS-to normalize your intestinal flora-A probiotic supplement

containing the

" friendly " intestinal bacteria,'Lactobacillus acidophilus' and

'Bifidobacterium bifidum 'can help limit the growth of candida, says Dr.

Metzger. The supplement that you'll

probably find in the store is called L.acidophilus, with B. bifidum also

listed on the

label. Look for a refrigerated supplement containing both bacteria and

follow the dosage recommendations on the label.(it comes in liquid or

capsules, although I'm

not sure in the supermarket that they have the capsules)

On Fri, 21 Apr 2006 15:02:19 -0500 " Alison " <Callesto71@...>

writes:

I AGREE WITH . Also: Sugar feeds Candida so you probably have grown

too

much candida in your gut. Unfortunately it stays there. Good things to

try

also are: Grapefruit Seed Extract (Not to be confused with grapeseed).

It's

a natural anti-biotic that kills yeast. I would start out with the lowest

dosage for you because it's strong stuff and you don't want a bad

" die-off "

reaction.

Alison, Chicago

_____

From: candidiasis [mailto:candidiasis ] On

Behalf Of susan

Sent: Friday, April 21, 2006 2:01 PM

candidiasis

Subject: Re: I am new to the group

Hi Peggy,

I am no expert, but I definitely think steroids and HRT are a bad idea.

With all of that sugar, candida is probably an issue for you, especially

given all of your itching. I discovered my systemic candidiasis as a

result

of vaginal yeast that would not go away. You might get itching in all

sorts

of places that are indicators of candida. Even when I was still

infected, my vaginal cultures would come up as negative, so it makes the

doctors confused. I would suggest reading on www.wholeapproach.com just

for

starters. You will need to do lots of research, because we usually end

up

self-treating as a result of doctors not understanding the condition. No

more sugar!! )

[Guest guest]

After taking Yeast defense and garlic yesterday, I woke up with a

headache.

I don't know why, but I can live with it. I took a Tylenol.

I don't know if I should take the Yeast Defense which was recommended to

me (by the way)

it is a dietary supplement with caprylic Acid, Pau D Arco, Garlic,

Grapefruitseed Extract, Chlorophyll Concentrate.

The garlic is in pearl form. I took two yesterday.

I am wondering do I take the Probiotics with these now?

Do I take all three recommended doses at once?

I know it is going to take time and believe me I am watching what I eat.

No sugar!

Not even splenda in my coffee. I bought some Eziel (sp) bread and good

yogurts

and Acidophilus milk and sea salt. I am going to change the way I eat. I

don't necessarily

need to do the Candida diet. I can tell as I have been well programed by

Craig

what is good and what is not.

JC food has gluten and starches in most of the foods, so I am going over

the menu with my

consultant to find out what I can do.

I need to know from everyone what exactly are the ALL foods that have a

not required??

In other words, is there a List???

We know what a starch is i.e. potato....

But a list would help me to see that I have a variety to choose from and

help me plan my

menu for the day better. Is there such a list?

-P

On Sat, 22 Apr 2006 03:06:03 -0500 " Alison " <Callesto71@...>

writes:

Well you bought all the good stuff! I should warn you that there is a

" Yeast

Die Off " that effects a lot of people. Here is a good article explaining

it:

http://www.modernherbalist.com/dieoff.html

I used a 'Super Bowel Cleanse " and it was AWFUL. There was 576mg of Senna

Powder in it and I didn't realize the potency of it. I already have

digestive problems but this was SO bad. It felt like my stools where made

of

acid! I definitely recommend drinking lots of water because getting the

initial toxins out of you may cause stools to be acidic or large. I

actually

had to buy 2 enemas as well as hemorrhoid suppositories and gel! It was

awful. That is why I say go slow. Also, I've heard your bowels get

dependant

on Senna so it isn't to be used for over a couple of days.

Also, I found the Probiotics that come in the small coated

balls( " pearls " )

work better for me. The capsule ones were giving me heartburn. Supposedly

the " pearls " can go through your stomach and not get digested until it

gets

to the intestines.

Good Luck!

Alison, Chicago

_____

From: candidiasis [mailto:candidiasis ] On

Behalf Of peggypooh1@...

Sent: Friday, April 21, 2006 7:31 PM

candidiasis

Subject: Re: I am new to the group

Alison

today I went to Whole foods and bought garlic, and probiotic that

includes grapefruit seed extract

and herbal ingred. that kills candida. I bought alphadopalis (sp) milk.

I don't want to overdose, but I was told to take the daily doses. I took

some an hour ago

and I feel different. I hope and pray that is what is wrong with me. I

have been going

through this for four months and I am tired.

this is what I was told:

GRAPEFRUIT SEED EXTRACT- This is a very potent antifungal that can help

kill candida, says Dr. Metzger. Because it's so potent, she cautions

women not to use more than is recommended on the label. Continue

treatment with capsules for 3 to 6 months,

she advises.

GARLIC-a candida killer, Taking capsules of garlic, which is also

antifungal, is very effective at killing candida, Take 500 milligrams

three or four times a day for 4 to 6

weeks.

PROBIOTICS-to normalize your intestinal flora-A probiotic supplement

containing the

" friendly " intestinal bacteria,'Lactobacillus acidophilus' and

'Bifidobacterium bifidum 'can help limit the growth of candida, says Dr.

Metzger. The supplement that you'll

probably find in the store is called L.acidophilus, with B. bifidum also

listed on the

label. Look for a refrigerated supplement containing both bacteria and

follow the dosage recommendations on the label.(it comes in liquid or

capsules, although I'm

not sure in the supermarket that they have the capsules)

On Fri, 21 Apr 2006 15:02:19 -0500 " Alison " <Callesto71@...>

writes:

I AGREE WITH . Also: Sugar feeds Candida so you probably have grown

too

much candida in your gut. Unfortunately it stays there. Good things to

try

also are: Grapefruit Seed Extract (Not to be confused with grapeseed).

It's

a natural anti-biotic that kills yeast. I would start out with the lowest

dosage for you because it's strong stuff and you don't want a bad

" die-off "

reaction.

Alison, Chicago

_____

From: candidiasis [mailto:candidiasis ] On

Behalf Of susan

Sent: Friday, April 21, 2006 2:01 PM

candidiasis

Subject: Re: I am new to the group

Hi Peggy,

I am no expert, but I definitely think steroids and HRT are a bad idea.

With all of that sugar, candida is probably an issue for you, especially

given all of your itching. I discovered my systemic candidiasis as a

result

of vaginal yeast that would not go away. You might get itching in all

sorts

of places that are indicators of candida. Even when I was still

infected, my vaginal cultures would come up as negative, so it makes the

doctors confused. I would suggest reading on www.wholeapproach.com just

for

starters. You will need to do lots of research, because we usually end

up

self-treating as a result of doctors not understanding the condition. No

more sugar!! )

[Guest guest]

Ronelle

do you have a planned candida diet already planned out?

If so could you share this with me?

-P

On Sat, 22 Apr 2006 07:18:14 +0200 " Gemini Bookkeeping "

<geminibooks@...> writes:

Hallo Peggy,

My name is Ronelle and I am from South Africa. I relate to you 100%. I

have been seeing

doctors for 3 years now from skin specialists to several other docters

and nobody could

help. I started to think it is all in my mind because nobody could tell

me what is wrong

and nobody could give me something that works. I have been on cortosone

courses

etc. About a month ago somebody told me about candida. I did research

on the web

and started a very strict candida diet. I also ordered a product

" candidate " from the

web. In SA the website is orders@... other website in

other countries is

nativeremedies.com

For the first time in the last three years, and especially last year in

September when the rashes came

out on my body, I HAVE NO ITCHING!!!! I have read a lot of emails and

everybody says that not every

person react to cures the same as another person but I can assure you try

everything something will help.

I am also drinking daily a very good Vitamin supplement, Biotin as well

as Grapefruit seed extract.

But please LEAVE THE CANDY that is a very big problem. With no doubt I

can tell you sugar is

one of the main reasons for the itching. I have tested it many times and

found when eating anything

with sugar I start itching that same day.

Be strong, possitive and keep it up with a proper candida diet.

Ronelle

I am new to the group

Hi my name is Peggy and I have a question...

Does anyone in the group have internal itching?

For the past four months I have been itching and scratching in moist

areas. I have seen five doctors but they do not know what it is.

But yet have no problem prescibing me pills. I have taken steroids

for one week only, doxepin, but that just helped me sleep at night. I

have purchased creams, ointments, lotions, etc. I read on the

internet that some women experience itching due to lack of estrogen.

So I called my doctor to prescribe me HRT. I wanted to try anything.

I did that for 7 weeks and it did not do any good except got rid of

my hot flashes. But at this point I would rather have hot flashes

than itching!

ONe doctor said she was surprised that not one doctor asked me to

take a stool culture for yeast, fungus type molds in my body. I

called my doctor and took stool specimen to the lab yesterday. I

doubt if it comes out positive, because I also read that fungus is

hard to find in these tests. Doctors do not have knowledge of this

type of problem.

Even if the test come out negative I am going to Whole Foods to talk

to someone about purchasing garlic, grape seed extract followed up by

probiotics. I am new to this although I do evening primrose and flax

seed oil on occasion.

Right now I didn't want anything in my system. I wanted to be clean

so the stool would be ripe. Heaven knows, I have tried everything. I

am going to a free workshop on finding out the natural way of

healing.

So does anyone have internal itching??

The reason I am asking is because the doctors all looked at me and

said we see no rash, no hives, the allergy tests all proved negative.

Mind you, I work at See's Candies and for the last year I have been

eating the candy left and right. Sometimes so much I would see

floating white balls infront of my face. One of my eyes almost faded

out (this happened twice). I do believe the candy has a lot to do

with it. Although I have not eaten the candy in a long time, I am

still itching. I tried to do the process of elimnation, but still am

baffled.

-P